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Very Bad Weekend

HopeforChuckHHopeforChuck Posts: 166
edited 06/11/2012 - 8:26 AM in Back Surgery and Neck Surgery
Well, I thought I would give up update because I think my experience of the past four days is an important factor for people to consider--for those who are having the surgery, those in the early stages of recovery, and those considering the surgery. I've also decided today that I am going to stay on this site for years to come regardless of whether or not my pain goes away. I have been so encouraged and blessed by the recent thread of success stories. I really think I am going to recover and when I do, I want to be here for others who are facing the same nightmare I did. I am a pastor and have walked through painful situations with so many different people, but until you are the one sitting in the hospital bed or facing daily chronic pain, you just really don't have a clue. I have also faced the loss of loved ones--my brother was killed when he was 16 and I have lost many others who were too young to die. This may sound like a stretch, but I now say that facing this kind of pain with the prospect that it may never get better is not the same as losing a loved one, but is almost as difficult. I've experienced both, so I know.

So I had the anterior fusion L5/S1, on Nov. 11. I was supposed to be a "slam-dunk" case--the rest of my back is great, I am young, non-smoker, in great shape, no nerve damage, just constant persistent back pain that was interferring with my lifestyle. I was on too many pain meds--still not able to do the things I wanted to do.

Recovery has been hard for me, but I felt like I was hitting my stride at week 6. I was back doing some things at church (I run a staff at a mega church and lead worship). December 24 is the height of the church year, so that was my target date back, very part-time. I came back and we had an awesome 12/24 service--we did Trans Siberian Orchestra's Carol of the Bells--we were rockin--I was rockin. I was walking A LOT.

About 2 weeks ago, I started to have pain in my left calf. Some of you may already know where this is going. I thought it was part of the recovery process because all of my tighter muscle groups have reacted poorly to the surgery. My hamstrings are extremely tight (comes from sitting at the piano for hours), so they rebelled at week 2. I just figured my calf was now doing the same. I stretched it, kept walking, all of this in the middle of coming back during Christmas.

Well, the pain got worse and worse. It would feel like a sudden charlie horse only worse and last for 10 seconds. Eventually, it felt like the calf was going to explode when I would have these episodes. This was a level 12 pain just for 10 seconds or so that would knock me off my feet. This went on for 10 days. Finally, I called the surgeon. They told me to go to the ER--this was 12/26.

I went in, and we had to endure the usual ER experience--so much hopelessness all around us--especially right after Christmas. People hurling like crazy. At one point, I told my wife, "let's go, I'm not waiting any longer...it's fine." We stayed and they scanned my leg for blood clots. Well, they found them--in the left calf. :jawdrop:

So...the doctor came in and said about 1/2 the doctors now days do not treat blood clots in the calf unless they are above the knee. They just let it run it's course. However, my wife then told the doc about my shortness of breath episodes. There have been several times during my recovery that I have had to "take a knee" or I would have passed out. Was told this was part of the recovery--body is tired from the surgery, etc. However, I have also had shortness of breath issues and slight chest pains for years. So, they did a cat scan of the lungs. A couple of hours later, she came back in the room and told me I had bi-lateral multiple pulmonary embolisms (clots in the lungs that had moved through the heart). :jawdrop:

She said I would be admitted and they would figure out what to do from there. I was admitted into a private room. A good friend of mine is one of the nurse managers at the hospital and when she heard I was in, she changed the room assignment while I was being transported from a shared room to a private room in the brand-spanking-new wing of the hospital. That was a blessing.

My primary care doctor started me on Lovenox shots. You give these to yourself in your stomach twice a day. He also started me on Cumidin. They put me on a heart monitor and kept me there until 12/29. One thing that still makes me wonder is that the nurse who did the initial scan of my calf was called back in to do another scan of my whole leg as I was worried the clot had moved up. She told me she had followed my chart and was "shocked" to see I had PE's. She said my clot was in such a non-consequential area of the calf, that she had rarely, if ever, seen a clot move from that area of the calf (or the calf itself) to the lungs. She didn't have any answers, but I have leared to listen to the "little guys" in health care who are on the front lines running these tests--they tend to know their stuff.

I talked to many doctors and nurses. I asked about contraindications between the blood thinners and the fusion and one doc said, "the fusion will probably be fine...but...so?" His point was the blood thinning was going to come first since we are talking life and death.

Well, my surgeon called and said I was pretty far from my surgery--7 weeks--for the clots to have been caused by the surgery--but, who knows? He said the fusion should be fine with the thinners. He said they have to put people on thinners all the time post-surgery if they develop clots during the actual surgery. For some surgeries, they put you on thinners ahead of time or during the surgery to prevent the clots.

The time in the hospital was VERY painful for my back. The hospital bed was a problem, lack of sleep. Also, on Saturday, I had a very bad bout of depression. I could not get control of myself. We have all gone through so much, but then to have this happen and to feel like it was a major set back was just over the top. I also thought about my four young children and wife--the life that I love so much--and realized I could have been gone--and perhaps I am going to be gone soon due to these clots or who knows what else--what will my family do? On the other hand, I knew that staying on this earth meant continued back pain, pain meds, and now these blood thinners that I am sure are bad for me, and again, what will my family do with me in this lame condition? I was very down, but collected myself by Sunday.

My surgeon and the PA have assured me that this should not interfere with the fusion. I am home now, and giving myself the shots twice a day. I also now have a standing order for blood tests every Wednesday so they can adjust the prescription levels in the Cumidin. They said I will be on this stuff for 6 months and maybe the rest of my life if the tests come back that I have a disorder.

I will tell you this--back in the summer, well before my fusion--I went to the local medical emergency center with pain in the same calf. It was the same kind of pain--although not nearly as severe, but it was enough for me to go in. They looked at it and said it was nothing. They didn't scan it. If they had scanned it they would have found the start of this blood clot--there is no doubt in my mind. Then they could have put me on blood thinners, I would not have had the PE's, and I would have timed the surgery with this in mind. You have to be persistent with health care--these people are wonderful--but they are human.

Many people have asked me since the surgery if I would do it again if I could go back (why do we trouble ourselves with these types of inane questions??) I have said that even with the severe recovery pain, things were looking up, and I was glad the implant was in, and I, with great fear and trepidation, if given the opportunity would still have gone through with the surgery, before this weekend. Well, this past weekend, I began to verbalize that the surgery was the biggest mistake of my life. I was in so much back pain--probably from the stress, not being at home, the beds in the hospital, and no sleep. Now I am home and my back pain is basically back to what it was the days before all this happened--so I am thankful. Perhaps the 3-4 days of being immmobilized was good for the back long term, since I had been doing so much. So, I am back on the road to recovery, ready to start walking again.

So--don't ignore the blood clot issue, pain in your calf, insist on a scan, and perhaps insist on the CT of the lungs even if they say it doesn't happen--it DOES happen--it happened to me.

We can do it.

Chuck
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Comments

  • Oh Chuck! Thank you for posting all this, in your dibilitated condition, with all you have on your mind & coping with everything going on in your body...I will keep you in my daily prayers (4th generation Lutheran here) and hope that you continue to get better, in every way.

    Thank you again for sharing this. Blessings to you today & please keep us posted when you feel up to it :)

    ~Lakeside
  • Thank God (and I do mean that literally) you got to the ER in time...who knows what a few more days or maybe even hours would have resulted in...I'm glad to hear that you're on the road to recovery, and gopefully you won't have to take Coumadin for life...that's such awful stuff

    take care Chuck and hang in there!
  • You've been through so much and it hardly seems fair. But then, as a Christian, you know that bad things often happen to good people. I am nearly 6 weeks post op - PLIF/decompression/synovial cyst removal. Am 56 so I'm not such a "perfect" candidate, esp. since I had such severe stenosis and accompanying symptoms for several months before surgery. Got thru my 6 hour surgery. Then on Christmas day, just when I was sorta beginning to feel more myself, my dear husband's brother died and my daughter had a miscarriage. I can't even travel with my husband for his brother's funeral! Not the same type of suffering that you have had to endure. But I know that it's true - God never gives us more than we can handle. And He always gives us a way to handle it. Thanks for your courageous post and at the risk of sounding trite -keep the faith. My favorite "inspirational saying" is as follows and it has gotten me through so many dark days -

    With God's strength behind you, His love within you and His arms underneath you, you are more than sufficient for the days ahead." God bless. Kathy in Atlanta
  • I'm sorry all of this happened to you, especially since you had a fusion prior to this. I can't imagine what you're going through, but I'm glad and relieved to hear from you. Take it easy and thanks for letting us know about this scary experience. >:D<
  • . . . moved me to tears. Feel so helpless that I can't do anything -- but offer my love and prayers for your continued safety.
  • I was just wondering who said you could have a bad weekend? Hmmmm....

    Crazy stuff. Blood clots scare me. I should say, though, that I used to be quite the hypochondriac. I think I was the only one asked my pediatrician to test me for Leukemia, and to scan my head for a brain tumor, and to check my neck for skin cancer. So it comes with the territory. I'm just a weirdo. It's good that your wife spoke up. Who knows what could have happened otherwise. If I were your wife I'd request chocolate and diamonds as a reward. However, I'm 22 and far from married, so we'll see how I feel when I reach that point :P Maybe I'll be over chocolate and diamonds. Or is that an eternal thing? Is there a female that doesn't like those things?

    I am loopy lately so I apologize if my silliness sucks. I can't help it. I think I'm PMSing because another thread yesterday made me crave brownies... What the heck.

    I think in situations like this it just makes you realize that no matter what we say or do, God's plan will prevail. He'll take you when he's ready for ya. And not a day sooner!!! There's obviously a reason for this setback... Will be nice when you get to see the positive aspects of it...!

    I gotta keep quiet for the next few days, I swear... It's like... Endorphin overload! Must be all the sugar & fast food. Makes me happy. Anyway, I am just too smiley and joyful lately, I'm sure it's gotta make some people want to wring my neck. I'm sure eventually I'll be back to my cynical self, though.

    I hope things start looking up from here. You seem pretty self aware and I think you got this. God will never give us more then we can handle! So he must think you're pretty strong :) I'm basically in awe of the whole sticking needles in your stomach yourself thing. That's like, hardcore. Major props for that! :P (Okay, I know. ENOUGH ALREADY, I'm shutting up now.)

    *HUGS*
  • I'm glad you're allright. That's a scary experience and you got through it with persistence and tenacity. I know it's difficult to go through all that but you're more than a conquerer and what He promised he will do it! God bless. Take care. Charry O:)
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I am so sorry! Blood clots are definitely scary! I'm glad your pain level has gone down somewhat. You are on the right path it seems. I know you have had such a hard time with your recovery. I'm just so sorry there was another loop thrown in.

    Take care. This too shall pass.....

    Caity
  • Did you ever stop to wonder that, had it not been for the surgery, that you would have ignored the pain in your calf for just a little longer and been in bigger trouble? Sometimes God DOES work in mysterious ways.

    I'm glad that you're on the right path now and hope that your pain continues to subside. I wonder how they didn't catch any of this in your pre-op work-up though.

    Keep us posted on your health, please. We'll be pulling for you.

    Griff
  • Thank you so much for posting about your experience. It serves to remind us that God is watching over us always. Even though we go through very trying times which are not removed, He is there in the midst WITH us! Thank you for that reminder. My faith has been getting a little thin here lately, and you gave me a boost in that regard.

    Having gone through so much, you will be an even better pastor. You can identify so much with others who are having bad things happen to them. You will be even more compassionate to those that are hurting.

    May our Father richly bless you and your family this coming year!
  • kathyy said:
    You've been through so much and it hardly seems fair. But then, as a Christian, you know that bad things often happen to good people. I am nearly 6 weeks post op - PLIF/decompression/synovial cyst removal. Am 56 so I'm not such a "perfect" candidate, esp. since I had such severe stenosis and accompanying symptoms for several months before surgery. Got thru my 6 hour surgery. Then on Christmas day, just when I was sorta beginning to feel more myself, my dear husband's brother died and my daughter had a miscarriage. I can't even travel with my husband for his brother's funeral! Not the same type of suffering that you have had to endure. But I know that it's true - God never gives us more than we can handle. And He always gives us a way to handle it. Thanks for your courageous post and at the risk of sounding trite -keep the faith. My favorite "inspirational saying" is as follows and it has gotten me through so many dark days -

    With God's strength behind you, His love within you and His arms underneath you, you are more than sufficient for the days ahead." God bless. Kathy in Atlanta
    Kathy,

    I am so sorry to hear about your brother in law and your daughter's baby. Life can be so hard at times. The room I had while in the hospital had a wall window that overlooked the landing strip of the ER. All day and especially all night the helicopters are flying in and out, rushing people on stretchers into the ER. The ambulances are coming in and out. At one point, the line to get into the ER was all the way outside. It was sobering. I know we are all supposed to be happy on New Year's--and I am in some ways--but this life is so fleeting. For me, I just have to continue to have hope. I hope things get better for you quickly. Please keep in touch,

    Chuck
  • Lakeside said:
    Oh Chuck! Thank you for posting all this, in your dibilitated condition, with all you have on your mind & coping with everything going on in your body...I will keep you in my daily prayers (4th generation Lutheran here) and hope that you continue to get better, in every way.

    Thank you again for sharing this. Blessings to you today & please keep us posted when you feel up to it :)

    ~Lakeside
    Thank you so much for your prayers. I have hope for a full recovery--I have to stay positive. Happy New Year!

    Chuck
  • scinmyheart said:
    Thank God (and I do mean that literally) you got to the ER in time...who knows what a few more days or maybe even hours would have resulted in...I'm glad to hear that you're on the road to recovery, and gopefully you won't have to take Coumadin for life...that's such awful stuff

    take care Chuck and hang in there!
    Well, I went for my first standing order weekly blood test today. They have to check the blood levels and adjust the Coumadin weekly. She told me if I don't hear back from my doc within 48 hours....well, that it is life and death...she felt I should have a hematologist overseeing this...but they said no in the hospital...that the PCP does it. The woman who took my blood said, "are you on Coumadin??? You are so young and healthy!!" I told her my story and she was shocked. So far, I don't feel too bad on the Coumadin, but the list of side effects is scary. I am also on pain meds--not too too much--but enough to qualify as a potential problem. Thanks for your nice note.

    Chuck
  • meydey321 said:
    I'm sorry all of this happened to you, especially since you had a fusion prior to this. I can't imagine what you're going through, but I'm glad and relieved to hear from you. Take it easy and thanks for letting us know about this scary experience. >:D<
    MeyDey,
    I'm not going to softpedal it--you are right that this was scary. I have shed many tears the past few days. Especially the morning after the diagnosis. Thanks for your support.
    Chuck
  • SoftEclipse said:
    . . . moved me to tears. Feel so helpless that I can't do anything -- but offer my love and prayers for your continued safety.
    In a strange kind of way, we are all in this together. Thank you for feeling my pain. I'm laughing and enjoying life today. I just can't think of the "what ifs." Hey, isn't that a song by ColdPlay? Yep, it is.

    Chuck
  • Lo said:
    I was just wondering who said you could have a bad weekend? Hmmmm....

    Crazy stuff. Blood clots scare me. I should say, though, that I used to be quite the hypochondriac. I think I was the only one asked my pediatrician to test me for Leukemia, and to scan my head for a brain tumor, and to check my neck for skin cancer. So it comes with the territory. I'm just a weirdo. It's good that your wife spoke up. Who knows what could have happened otherwise. If I were your wife I'd request chocolate and diamonds as a reward. However, I'm 22 and far from married, so we'll see how I feel when I reach that point :P Maybe I'll be over chocolate and diamonds. Or is that an eternal thing? Is there a female that doesn't like those things?



    I am loopy lately so I apologize if my silliness sucks. I can't help it. I think I'm PMSing because another thread yesterday made me crave brownies... What the heck.

    I think in situations like this it just makes you realize that no matter what we say or do, God's plan will prevail. He'll take you when he's ready for ya. And not a day sooner!!! There's obviously a reason for this setback... Will be nice when you get to see the positive aspects of it...!

    I gotta keep quiet for the next few days, I swear... It's like... Endorphin overload! Must be all the sugar & fast food. Makes me happy. Anyway, I am just too smiley and joyful lately, I'm sure it's gotta make some people want to wring my neck. I'm sure eventually I'll be back to my cynical self, though.

    I hope things start looking up from here. You seem pretty self aware and I think you got this. God will never give us more then we can handle! So he must think you're pretty strong :) I'm basically in awe of the whole sticking needles in your stomach yourself thing. That's like, hardcore. Major props for that! :P (Okay, I know. ENOUGH ALREADY, I'm shutting up now.)

    *HUGS*

    Lo,

    You are sweet. I wish you could pass some endorphins my way!

    Chuck
  • charry said:
    I'm glad you're allright. That's a scary experience and you got through it with persistence and tenacity. I know it's difficult to go through all that but you're more than a conquerer and what He promised he will do it! God bless. Take care. Charry O:)
    Charry,

    Thank you for the Words of hope. I need them right now.

    Chuck
  • caityc said:
    I am so sorry! Blood clots are definitely scary! I'm glad your pain level has gone down somewhat. You are on the right path it seems. I know you have had such a hard time with your recovery. I'm just so sorry there was another loop thrown in.

    Take care. This too shall pass.....

    Caity
    I have another friend who keeps saying, "this too shall pass." Life is pretty amazing.

    Chuck
  • griff said:
    Did you ever stop to wonder that, had it not been for the surgery, that you would have ignored the pain in your calf for just a little longer and been in bigger trouble? Sometimes God DOES work in mysterious ways.

    I'm glad that you're on the right path now and hope that your pain continues to subside. I wonder how they didn't catch any of this in your pre-op work-up though.

    Keep us posted on your health, please. We'll be pulling for you.

    Griff
    Griff,

    I've considered so many what if scanarios...you are right, we just have to stay positive and assume these things happen for a reason. I do know if they had properly diagnosed me back in the summer, it would have changed the timing of this whole thing and I would have handled the blood issue first. But, I can't go there. Thanks again,

    Chuck
  • Joy said:
    Thank you so much for posting about your experience. It serves to remind us that God is watching over us always. Even though we go through very trying times which are not removed, He is there in the midst WITH us! Thank you for that reminder. My faith has been getting a little thin here lately, and you gave me a boost in that regard.

    Having gone through so much, you will be an even better pastor. You can identify so much with others who are having bad things happen to them. You will be even more compassionate to those that are hurting.

    May our Father richly bless you and your family this coming year!
    Joy,

    You are soooooo right. I have a totally new perspective now on those who suffer with chronic pain and scary health issues. I've always been empathetic--but now I know that most people put on a face, but when night falls, it can be terrifying. Before all of this happened, I had written on another thread that we all just have to life in the moment. We have eternity past and eternity future: each of those is a vast ocean of possibility, both good and bad. But then we have this moment called the present. The words I wrote above are now a past event. Right now, to be totally honest, in this present, I am doing just fine. I know I am going to hurt when I move from this spot on my bed--but that too will become a past event. Sorry...I've been developing this theology of time thing...I'm so weird. :<
  • Chuck, as I read your post and the following responses I realized I didn't know how or what to say. I just know I feel sorry for what you and your family are going through, and that I wish I could help. I also know what doesn't kill 'ya makes you stronger. Sometimes we just don't want to be stronger. I will say a prayer for you this new years eve. I also realized that people everywhere are going through so much we all need to show some patience, love and kindness to each other. Peace
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